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Flowerpot

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Joined
Aug 28, 2008
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80
Reason
CALS
Country
UK
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Tyne and Wear
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Newcastle upon Tyne
Hi

I am sorry to take from you all and give little back , but need some advice. When the time comes , Mum has said that she does not want intervention with feeding / breathing. What I am frightened of is her starving to death . The MND nurse has already reassured us re drugs they can administer for her breathing , to ease passage to death.

Has anyone had experience of this ? Her speech has deterioated over the past few days but wonder whether this is also exacerbated by her move to the nursing home yesterday?

Yesterday she seemed so settled but today Mum became very distressed over the care she was exposed to. The night time staff do not speak good english and were very curt and , of course , Mum cannot speak too well either ! My sister and I went along this afternoon and all seems to have calmed down but we just hate leaving her , wondering what might happen when we are not there.

Sorry to blather on but feeling qute emotional

Thank you

Flowerpot:confused:
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Flowerpot ... As to your first question, it is my understanding that when people choose not to have the feeding tube, the doctors and nurses will do all the appropriate things to keep your mum comfortable and in no pain or distress. She will not feel as if she's "starving."

Second, I'm sure that the change to the nursing home could have stressed your mum, and made her symptoms a little worse.

About the night staff. I've spent a lot of time in hospitals, and know that some patients become a little disoriented at night in hospitals, because it is a strange environment with strange people, and all their normal clues about day and night are missing. (i.e., lights left on all the time, noises and voices in the hallways.) I also know that some nurses and staff can be overworked or abrupt ... and having a communication problem can make it worse.

If I were in your shoes, and if you can work it into your schedule, I'd find out what time the shifts change, and try to meet your mum's night nurse when she comes on duty. If you could make a personal appeal ... explain that your mum has a really serious disease, has trouble communicating and needs a little extra patience ... it might help. A box of candy for the nurses wouldn't hurt either! This is one situation where kissing up really pays off.

Good luck! I'm hoping that she will have peaceful nights. She is surely blessed with wonderful daughters.
BethU
 

brooksea

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HM
Flowerpot,

I'm sorry you had tp put your Mum in the nursing home. I hope you will able to find someone there that has a better understanding of ALS/MND.

I know when my husband is extremely tired or anxious, his speech becomes worse. So, hopefully your Mum will become comfortable in her new surroundings and her symptoms will be somewhat alleviated.
 

Debbie53

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Lost a loved one
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US
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Colorado
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Greeley
Boy, can I relate, Flowerpot. My dad is going to make the transition from assisted living to nursing tomorrow or the next day. The saddest part for him (besides knowing that he's dying, of course) is that he has about 600 books (down from 1,000 a few years ago). He can only take 20 or 30, probably, and he loves every single one. He keeps hoping people will take an interest and really want a bunch of them - some he's had for over 70 years. He (we) just lost my mom 3 months ago, and now he's losing his life, too. But he's still sharp as ever, just as concerned about the election (!) and cares about everyone around him. It is incredibly hard when you see them every day and every day they're worse! I hope your Mum settles in ok and that they really are treating her well....
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Thank you all

My sister and I spoke with the home manager who was sympathetic , although he said he had not had time to see Mum since she was admitted .

We also spoke with the nurse on her floor , who was fabulous. She changed Mum's mattress and also took the care workers to see Mum , so they could agree how best they would transfer Mum in and out of bed.

Today , Mum seems much brighter and her speech has improved . As we say in the North east of England " shy bairns get nowt " so I am glad we addressed it quickly.

Flowerpot:-D
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
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CA
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Quebec
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Montreal
Flowerpot, you have a great attitude and a positive outlook which I am sure helps your mom more than you even know. I'm very happy to hear that her speech has improved!
I truly hope she gets good rest and enjoys her visits with you and your sister. She's lucky to have you!
Warmest regards from New York,
Thelma
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Today , Mum seems much brighter and her speech has improved . As we say in the North east of England " shy bairns get nowt " so I am glad we addressed it quickly.

Wonderful news! So glad you got it straightened out. In the states, we say, "It's the squeeky wheel that gets the grease." :)

Take care,
BethU
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Squeaky wheels....

BethU - I like it !

Another hurdle today when a carer was overheard to say about Mum " she is going to be a nightmare " -

I was assertive and sorted them out ! What a shame as her main nurse and carer are wonderful

Flowerpot

:mad:
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
Please.may I Vent?

I read flowerpot's posts and the answers. I was esp. interested in her statement
about her mother's speech as she gets weaker. Most of you know my husband is
bedfast and on a bi-pap 24/7. As he gets weaker, so does his voice. His hospital
bed is in the sun room, and I sleep on the nearby couch, and stay in here with
him 24/7. Some days he is very very 'needy' and clingy, and as I am leaving to
go out of the room, or have just sat down on the couch for a minute, I will hear
him trying to talk, and I have to go over and lean down close so that I can try
and make out what he is saying. Some times he has to repeat it several times,
and I still can't understand it all. This frustrates him so much.

He knows the end is near, and he is getting very whiney and demanding. I rarely
have a single minute to myself and if my granddaughter comes over or his sister
drives 2 hours for a wk end so I can get out and run errands, withing 30 minutes,
he is having them call me and want to know when I'm coming home.

I know he is very sick, and I love this man dearly, but we truly cannot afford to
hire a knowledgeable health care giver. It would cost 100 a day here in TN. None
of his family have offereda dime to help with this altho they all say 'you need to
get some help.

Some days I feel soooo resentful and tired and exhausted, then I feel guilty bec.
I know he would do it for me. I truly don't know how much longer I can go on
like this.

Thanks for listening.

Jackiemax
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I feel deeply for each of you and am not sure I should respond because I am the PALS that is causing all the distress you lovely ladies are experiencing!

I have a fantastic wife and family who have rallied around -- I am spoiled and blessed and almost feel guilty for what I have when so many others are suffering so much! What I would really like to say to you ladies is THANK YOU! You may never know how much your sacrifice is appreciated this side of heaven, but it is! I am sure your PALS really do appreciate you! And I pray God Blesses you abundantly, and gives you strength to continue your work of mercy. This I pray for all CALS! You are all angels!
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Jackiemax,
I am so sorry for what you are going through. I wish I could help somehow. Here I was complaining the other day, and I can't even imagine how trying this must be for you! You are in my prayers.
 

brooksea

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Messages
5,171
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Other
Country
HM
Keeping you all close to my heart!

And thanks Joel for the encouraging words...
 

CindyM

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Joined
Sep 17, 2006
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3,543
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Learn about ALS
Country
US
State
New England
City
Anytown
Our CALS are angels, no doubt about it. It is one of the most demanding and selfless jobs around.

Many of you do it because, you know if the situation were the other way around, your spouse would do the same for you. Whatever the reason, you are to be commended for reaching out to another human being in their hour of darkest need. When your task is finally finished, you will have qualities that those of us not experiencing these challenges will never possess.

Thank you all! Cindy
 
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